Digestive issues and reflux remaining in nearly 3 year old. Hospital tomorrow-what to ask? (TMI if eating!)

[bethylou]

I'll try and keep this as brief as possible, but I'm not known for my brevity and this is an on-going story!

DS1 had silent reflux as a baby. Has been on ranitidine ever since. Tried to get him off it several times and he starts being sick/feeling sick/experiencing lots of sicky burps.

Last May he had a tummy bug on and off for 12 days. Then became anaemic and lethargic and didn't pick up. Had antibiotics for UTI but still didn't improve.

Saw dietician in September who suggested lactose intolerance. Immediate improvement within 48 hours of changing diet and gained weight for first time since May. Then the symptoms started reappearing. Cut out gluten as well to rest his gut, along with most uncooked fruit and veg. Improved again but now downhill again.

Symptoms:
daily tummyache (as much as a toddler is to be believed that they know what they mean);
horrid bowel movements of varying colours from green, black, yellow, beige and floaty, often very loose and sometimes mucousy. Also: anaemia; poor appetite; very pale, lethargic; constant 'nasal drip'; disturbed sleep; has dropped from between the 50th and 75th centile for weight to about 35th. Has also dropped a centile for height (from 90th to 75th in that time)

I want my little boy back! We are seeing a gastroenterologist tomorrow at our local hospital. Whta do I want to achieve? What should I expect? Anyone any ideas? I'm a bit lost! DH coming too so that I don't appear as just a fussy mother.

a late bump before bed - not being as rude as it sounds!

has he been tested for coeliac disease? or have you tried omeprazole? ds used to outgrow all other med so quickly and omeprazole was the only one that really helped.

poor sand you though its really horrid.

ds and

Thanks. He hasn't had omeprazole, although DH is on it and DS2 has moved from that to lanzoprazole. I forgot to mention that he has been tested for coeliac disease and CMP allergy-tested negative to both, and yet the dietician feels the symptoms really fit.

was going to 2nd a test for coeliacs...

How was he tested??

If it was blood test then it can be unreliable at his age....

My DD has lots of food intolerances and has tested negative for coeliacs blood test but is being referred for gut biopsy which is more reliable

The only thing with gut biopsy is he will need to be eating wheat/gluten for it to work iyswim

DD was 3 end of Jan BTW so roughly same age...

Its horrid I feel your pain, DD has similar symptoms as your DS but luckily not the weight loss....

Sometimes she lifts her top up and presses her tummy against a cold surface, like she is uncomfortable and I won't even talk about the poos (TMI)

hi
just to add in my own experience although it may not be of any help!!!

DS2 had very similar issues to yours, especially the slow weight gain, tummy aches, lactose intolerant, horrible poos. He has had many hospital checks, such as a sweat test for CF (he also had lots of problems with his chest), coeliac, etc etc but nothing came up! So we pretty much got nowhere with investigations apart from eliminating anything serious which was in itself a relief.

Cutting a very long story short (eyelids closing very tired sorry)... he is now 8 and has vastly improved. He still is a skinny whippet, poor appetite, his poos are still frequent (3 or 4 a day) and not very pleasant, and he does get occasional (maybe once a week) tummyaches that dont seem to last very long. That's it. He is quite happy, not lethargic and nothing else to alarm us. Nothing ever diagnosed, he was signed off the specialist about 18 months ago when they felt he was getting along quite well. We were happy with that too in that we felt we had exhausted all possibilities.

Only telling you this to help, not depress you, but just to say that occasionally, like us, sometimes there just isn't a straightforward answer. Hopefully you'll get on well tomorrow though.

Thanks. I'm interested to hear that the blood test isn't always accurate at the age of 3.

Unfortunately, the hospital have cocked up royally and had him booked in for the adult gastro clinic (even though I rang to query this 3 weeks ago, having spotted the possible error!) so we now have to wait another two weeks. Initially it was going to be 6 weeks, but I'm getting rather good at complaining, sadly!

Finger I guess that outcome would satisfy me if I felt we were on top of the symptoms. However, at the moment, trying to persuade a 2 year old to eat when it probably causes him discomfort is really hard going. I hope your DS continues to do well.

So annoying for you that the hospital have cocked up.

Have you cut out dairy and soya completely? You mention lactose intolerance (quite common after a stomach bug) and negative test for CPM allergy. However my DD (2.10) has recently gone back to being CPM intolerant. She had silent reflux until about 18 months and was CPM intolerant. Then everything seemed to improve. She continued to get hiccups frequently but gained weight well and was not in any discomfort. About 1 month ago she suddenly started getting diarrhoea yet did not seem to have a bug and now is only OK with no dairy.

Hope you find a solution soon.

I was going to second testing for coeliac too. I know that our friend's daughter had similar symptoms and it took a long, long time for them to actually diagnose it. IIRC, it is very important for them to actually be consuming gluten at the time of the test (you mention you cut it out of his diet). But surely the hosp would know that and would have told you....

Our paed said he was going to do a blood test on our DS for CMP intolerance but not to put too much stock by the results as it was only likely to show positive if DS was properly allergic. Even if negative it was still entirely possible for him to be CMP intolerant.

Bethylou - just an empathy posting really. I have 3 DS all with different intolerances and problems with their bowels.
DS3 is 3.7 and sounds a similar history to your DS. He had negative tests for CMP and Coeliac, but positive biopsy during a fluoroscopy for lactose. He has swallowing issues and meal times are a nightmare. He willingly goes to toilet on request, but only occasionally recognises the need to go. he soils/goes on the toilet 6+ times a day. At 2 he was 95+ centime, now he is below 50.
Gastroenterology have said IBS, patted me on the hand and told me that 'it's a real disease'.
He starts full time school in September. It is unlikely that we will get any further with the gastro team as his next appt is march, just to 'monitor'. They don't know where to go from here. So he will start probably still soiling, probably still on puree, but hey, that's OK - it's a real disease.
I started this whole thing when DS3 was 11 months old - and there are still no definitive answers. My eldest DS is 8 and still has cramps, lethargy, bouts of diarrhoea, multiple diagnosed intolerances and IBS.
I guess what i'm saying is that they may have no answers for you at all. Or you might find the answers, which i hope you do . It seems that Gastroenterologists have a list of tests and check sheets and just keep working their way through and hope to 'get a result'. They start with the least invasive (also the cheapest ) - which in honesty is good for a 3 year old. They also start with the cheapest medication for diarrhoea, which may work, but there are many different options.
Just keep pushing for appointments to review and don't let months disappear between tests and trying things out etc.
Before your appointment, keep a food diary and a poo chart. Food diary is simple enough, poo diary showing times and consistency/colour. It will show the gastroenterologist that you mean business - and help answer their questions as to how many times a week they go etc etc.
Hope all goes well

Thanks auntevil. The appointment was cancelled so we wait another two weeks...

I thought today about keeping a stool chart - I've even used them for the pupils with whom I work so why this hadn't occurred to me earlier, I don't know!! Food diary too - thanks.

I am a very annoying mother who does push for appointments and follow up!